Savings Eggs for BRCA Positive young women before BSO.

[Lindaura]

Okay, here is my problem:

I have a beautiful 41 year old daughter, who is not in a relationship now and doesn’t see one in the near future, but, like me, she is BRCA1 positive.

Because this Ovarian Cancer is such an awful disease, especially as I am in treatment for my first recurrence, I was anxious for my daughter to get the offered BSO, removing her ovaries and Fallopian tubes as soon as possible.

She has not had a period in 5 years, but was never menapausal, however when she was examined by her Gyny surgeon, he told her that her ovaries looked healthy.

Both of us have another unrelated mutation which causes a blood disease that had impacted her childhood in a very bad way.

It is also hereditary and once I knew I had passed it on to her, I chose to not have any more children.

It never even occurred to me that my daughter would want any children, given these two hereditary factors. Boy was I wrong.

Now she wants to have her eggs frozen in the hopes that one day she could have them fertilised and either implanted in herself, or to find a surrogate.

Help!!! I would like to get her counselling on her options and some good advice.

We live in the UK. What can I do???

Please any advice gratefully received.

Thank you,

Laura

[Bettyxxx]

Hi Laura

My daughter has had ivf (she is pregnant at the moment) so i am going to be a granny really soon and i cant wait. I am not braca + but i know they had quite in depth counselling as part of the ivf process so hopefully they will help when your daughter applies to have her eggs frozen. Retrieving eggs is quite complex she had to have lots of drugs and scans so i am sure they will be extra careful and caring with your daughter because of your histories xx

Hope that helps

Diane

[Lindaura in reply to Bettyxxx]

Dear Diane,

Your level headed response is helpful.

But I din’t Know where to start. Where do we turn for counselling?

MacMillan? Do we go back to our original genetics Counsellor?

Do we speak to her Gyny surgeon?

If anything is possible, it would have to be on the NHS...

Just in a turmoil about this.

Thank you,

Laura

[Bettyxxx in reply to Lindaura]

Hi laura

This is a terrible dilema for you xx

My daughter also has a genetic condition ehlers danlos syndrome which can be hereditary, i struggled with the thought she might pass it on to my grandchild, but realised its not my choice and thats hard xx my daughter is level headed and she will have weighed up the pros and cons. I decided my role was just to support them whenever i can (easier said than done).

I had counselling arranged from my GP and that really helped at the beginning of my journey so you could try that option, also the GP will know what is available from an ivf perspective in your area, as its different in each area. I think i would contact macmillan too as they will probably be able to signpost you for some help xx. Ivf is a long slow process with limited success over the age of 35 so nature may take over anyway in which case she will need different support xx as others say there may be some further ivf screening available to look for these anomalys. Does she have the means to ‘go private’ if its not available on the nhs? Otherwise she will need GP referral to start with

Hope that helps

Diane

xxx

[Lindaura in reply to Bettyxxx]

Thank you so much for that.

No, we do not have the means to go private. My cancer has ruined our small business and we are grateful for the NHS.

Kind regards,

Laura

[Bettyxxx in reply to Lindaura]

Good luck xxx

[RonLitBer]

There seems to be a lot packed into your post. How do you feel about your daughter having a child based on your own decision to not have more children since you did not wish to pass on your mutation to another child? I guess now it is also the possibility of a BRCA 1 mutation being transmitted. When you say that it never occurred to you that your daughter would want to have children is that too reflective of your own thinking and previous decision perhaps? It sounds like in spite of your concern you recognize her wish to possibly have a child so I think getting her some counselling and good advice will help her and yourself also. It sounds like a tough road she will be travelling. Maybe to some degree her wish for a child is on some level a reaction to your illness as well. Who knows.

[Lindaura in reply to RonLitBer]

I think the idea of mortality has definitely become a reality and she suddenly hates being the end of our genetic line, defective as it is...

But we need counselling desperately and I don’t know where to get it????

Can you help?

Thanks,

Laura

[RonLitBer in reply to Lindaura]

Sounds like your daughter has suffered terribly and no doubt that has been difficult for your whole family.

I think this is pretty basic but maybe a good place to start.

nhs.uk/conditions/genetics/...

bsgm.org.uk/information-edu...

There are screening tests that can be done so maybe that would be an initial clarification worth pursuing. Pre-implantation genetic diagnosis may only be able to reduce the possibility of passing on a mutation but you could both find all that out. A friend of mine has a son with MS and he has chosen to not have a child with his partner since there is no screening available for MS at this time. By chance does she have thalassaemia?

[Lindaura in reply to RonLitBer]

Thank you for your help.

She has Hereditary Spherocytosis, which can go from mild to moderate, as for me, or to severe, as it was for her and can be worse in subsequent generations.

Kind regards,

Laura

[RonLitBer in reply to Lindaura]

I see your concern. Gosh lyme disease too. I came across this place.

liverpoolwomens.nhs.uk/our-...

I don't know much about services in the United Kingdom and know that you are in Bath and this is Liverpool but maybe they can offer some assistance or guidance in regard to finding some direction with accessing what you and your daughter need.

[Maus123]

Hi Laura. I don't have children but can imagine this being an emotional topic. You said it's a problem. What's the problematic/bothersome bit about her plan for you? The risk of passing a faulty BRCA gene on to her child?

Xx. Maus

[Lindaura in reply to Maus123]

Dear Maus,

I carry a hereditary blood disease that got worse for my daughter. It meant that she was terribly aneamic when she was born, needing many blood transfusions as an infant, and keeping her from a normal active childhood until her Spleen was removed at age 5 and a half, in a scary major operation.

After that, her immune system was greatly impaired, so that when she was infected with Lyme Disease, she could not fight it off and spen her teenage years in and out of hospital and the next ten years housebound.

She has had an awful life, but has led the life of the mind, reading voraciously, listening to different styles of music, and has been a great companion to me. She is also gorgeous, but has a very dismorphic attitude about herself.

Anyway, she also has a negative view, naturally, of this life, so it never occurred to me that she would want to bring another life into this world with all the negatives she has experienced.

So, now we have the BRCA Mutation, too.

I need help finding counselling!

I don’t know where to start.

Thanks,

Laura

[Maus123 in reply to Lindaura]

Oh gosh, that is a lot to deal with. I think if it makes her happy to consider giving birth, it might still be worth it. But I also know firsthand the devastating impact of a failed IVF attempt. At the time I was told it takes 6 attempts on average for IVF to take hold, and I was 35 then.

If she is maybe vulnerable at times (who wouldn't, having suffered so much already), a possible failure to conceive or even get a surrogate arrangement off the ground might be difficult to digest. In fact, I gave up on IVF after that first try. Didn't think I could bear it again. And oh so quietly, I sometimes think about that never-was-to-be birth date of 25 May 2005, and the same gut wrenching feeling hits me again.

So maybe in addition to genetic councelling, the psychological angle is worth covering too?

The Royal Marsden has a genetic councelling service (not sure if it is covered by the nhs, but may be worth a call?) :

royalmarsden.nhs.uk/our-con...

Whatever she decides, sometimes life is worth taking a risk, and she will be able to count on her loving mother for support. Hope you two will receive the help you need. xx. Maus

[Lindaura in reply to Maus123]

Thanks Maus,

My heart goes out to you, too.

But I will try to get that counselling ASAP.

Hugs,

Laura

[Lou53]

Laura,

I was offered genetic counselling when I took the BRCA gene test so this should be available to you and your daughter through the hospital/your ONC team.

It's a lot to work through so probably best to get some support as you say.

Louise

[Maxjor]

Laura--here in the U.S. when I brought up the fact that my boys may have the gene (due to the potential "pre-existing conditions" stopping someone from being approved for insurance or getting much higher premiums they have chosen not to be tested yet) my genetisist said they can be selective with the fertilized eggs to make sure they do not have the BRCA gene. Any possibility of that there???